Lisa McHale

McHale’s husband Tom, a former Tampa Bay Buccaneers lineman, was the sixth former NFL player to be diagnosed with CTE. Here, she describes her shock at the diagnosis, particularly since she had never known Tom to be diagnosed with a concussion. McHale now works as director of family relations at the Sports Legacy Institute. She spoke to FRONTLINE’s Jim Gilmore on May 21, 2013.

McHale’s husband Tom, a former Tampa Bay Buccaneers lineman, was the sixth former NFL player to be diagnosed with CTE. Here, she describes her shock at the diagnosis, particularly since she had never known Tom to be diagnosed with a concussion. McHale now works as director of family relations at the Sports Legacy Institute. She spoke to FRONTLINE’s Jim Gilmore on May 21, 2013.

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To begin with, Lisa, tell me a little bit about Tom during his prime. Tell me who he was, the kind of guy he was, what football meant to him and what he meant to football.

First of all, he was just a truly remarkable person. He was one of those people that a lot of times I would think was just too good to be true. He was a fantastic husband. And I met him so young. He was just wonderful in so many ways. He was just bright. He was intelligent. He was interesting. He was interested in people. He engaged in life. And yet he was an athlete. I mean, he kind of had this side to him that he's not what you would have expected, and certainly in an NFL football player, I would think.

So often he was referred to as kind of a "gentle giant," which isn't uncommon. You know, I hear that all the time among specifically offensive linemen within the NFL. They're so big, people expect them to have this kind of mean, aggressive personality, and he was anything but.

He was a phenomenal athlete in anything he did. You know, he played tennis great. Whatever he picked up he did well. And he was a good athlete. He was good at football. And he loved the game.

But what's interesting about Tom, and I think what sets him apart from a lot of other professional football players specifically, is that I don't believe that football was the end all and be all for Tom. He loved it, but it was one of the things that he loved in life. And I think that sets him apart in a lot of ways.

There were many decisions and circumstances in his life that kind of would lead you to the impression that while he loved the sport, it was not his primary focus and goal. For one thing, and probably most importantly, he was on full scholarship at the University of Maryland, and a starter as a sophomore. Had already gone to two bowl games as a freshman and as a sophomore. Was slated to go into his junior year starting, and he decided to leave Maryland. Gave up his full scholarship to ultimately go to Cornell University, knowing that ultimately his career goals were to open and manage restaurants. From the time he was a kid, that was one of his loves.

I don't believe that there are a lot of people out there that would have done that same thing. You know, a lot of people said: "You're absolutely nuts. You're giving up an opportunity to play in the NFL." And I don't know that he believed that he was giving up that opportunity. I don't know if he would have made the decision if he fully felt that this means I'll never play, but I think he was willing to take that chance. And he believed if he was good enough that they would find him wherever he went. ...

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So what did the game mean to him? How long did he play? How was that period of life? What was it like to be involved in that world? What did they mean to him?

It was awesome. It was a lot of fun. What can you say? You're playing in the NFL, and Tom loved his career. He certainly loved the game. Loved Sundays. Nobody likes practicing.

But it was exciting, and it was a lot of fun for him. The money was good. The money wasn't what it is now. And he came in actually signed as a free agent, so the first year certainly barely made anything. I think he signed an up-down clause and made very little money, but certainly no complaints. Right out of college we were able to build a nice nest egg on the money he made.

And it was fun. I mean, there's nothing like going into the stadium and hearing the players announced, and hearing your husband's name -- you know, Tom, left, right, whatever he was playing at the time. And he loved it. You know, people, everywhere you go, they want to talk to you; they think it's exciting. Not a lot of guys have that opportunity.

But again, the interesting thing about Tom is that he certainly didn't tout it, and if we were out and something and somebody would say, because he was big, "Do you play football?," if he could get away with it, he sometimes would just say, "No," or discourage. He didn't eat it up to the extent that a lot of people do. It was fun for him. He loved the game. It still didn't define who he was.

But very supportive? A lot of people talk about being in the NFL team as being part of a family. What was that like?

Yeah. You know, that was the best part of it. I'd say the camaraderie among the teammates, he loved that. And as we would be approaching training camp every year, he'd say: "I do miss that. I miss being in the locker room with the guys. I miss going out on Monday nights" -- I guess was like their Saturday night -- "with the guys," and developed some very strong friendships. He always missed that once it was all over.

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How does retirement come? What's the view toward the future at that point?

Tom played nine years in the pros. ... Because of the transfer from Maryland to Cornell, and then his years of eligibility were up, he had to either go pro or decide not to and stay in school and finish. And he knew that he could always go back and finish school; he couldn't always go back later and play in the pros.

So when he went off and played in the pros, he had not yet graduated from Cornell, so we went back in the off-seasons of '95 and '96 to finish up. He kind of was gearing up and ramping up for what life was going to be like after football, actually, because it was going to be in restaurants, which he had always had a love for. He always loved food, loved cooking; he was passionate about this part of life. He actually was looking forward to it.

So I think it's a little rare to -- he was ready to walk away. I think the beautiful thing about Tom is he had the opportunity to really walk out on his own, that they didn't push him out of the game kicking and screaming. He was able to walk away and say, "You know, I had a really nice nine-year career." And he loved it. But he was able -- he was ready to move on.

And injuries. Did he have a lot of injuries?

He had -- of major injuries he was really, really fortunate. He blew out a knee. I can't remember what year it was, but I believe he just partially tore a medial collateral ligament. It was probably one of the most serious. And then I believe his final year with Miami, I recall toward the end of that season he had a pretty bad groin pull, which may have affected, you know, really his comfort level coming back.

He had a couple of opportunities to come back for a tenth training camp. He was offered at least two contracts with two different teams, and he made the decision: "You know, I've played nine years. The wear and tear on my body has been really quite significant, and quite frankly, I think I want to be able to go out in the backyard and play with the kids when they get older. I think it's time for me to sit this one out."

We had never, ever had a conversation about concussions, so I -- you know, that's what's a really interesting thing for me now. Now, knowing what I know, I can't imagine he played a nine-year career, four years in college, all those years, four years in high school and then down to peewee level, having never had one. And in fact I've had a conversation with a teammate who remembers full well Tom not knowing where he was in between, and they were giving him smelling salt so he could go back out.

I think that's the gist of all of this for me, is that concussions were happening all the time. And I have to assume he had no idea that there was any reason that he should be concerned or that what he was actually experiencing was a concussion.

So describe him in retirement. Does he go downhill pretty quickly? Or how does it work?

Initially I would say no. When he retired, it was interesting, because he had that option of going into a tenth training camp. He said, "You know, I really am ready to move onto this restaurant part." So he said, "I think I'm going to do this internship with this restaurant and make $35,000 a year or $30,000 a year or something, and work long hours training as a restaurant manager."

And you know what? He loved it. He absolutely loved it. It actually was a good friend of his who was the owner/operator of that particular -- it was a LongHorn Steakhouse, and they had a great training program. He'd get up 4:30 in the morning, whatever it was. He was at that time a morning person. He loved it. He thrived on getting up early. He'd accomplish more by the time, you know -- and be home by -- I don't recall, early afternoon or whatever. But he enjoyed that.

Those early years he was very much Tom, very much passionate about what he was doing. And this was something he had been looking forward to since he was a kid.

So I think it's an interesting thing, because you hear so much about professional athletes having a really, really hard time retiring, and I would have to say honestly that Tom was not among them. It was so interesting for me later when he was having difficulties, when he was struggling with and admitting that "You know what? I'm really depressed. I can't do this anymore. The pain is killing me," and all this. And I really actually wondered, is it possible that he could have had this delayed experience that all professional athletes go through, that he now is struggling with life outside of the celebrity?

So what were you thinking about why these symptoms were coming about?

I really was caught very much by surprise with it. It's so hard to really put a finger on it, because the changes were very, very gradual. It's not like one day he's Tom, and then one day all of a sudden he's depressed. I think it was probably a very, very gradual thing over a number of years. But I'm sure they began somewhere in the 30s, because by 40 it was obvious to me that there was something terribly wrong with Tom. But I had no idea what it was.

It was very, very -- it was scary. I remember the night we were lying in bed, and he said to me: "Lisa, I'm not enjoying the restaurant business anymore. I think I want to get out." And this is McHale's Chop House. This is his baby. This is his brainchild. He loved doing it. He loved every aspect of it initially. And how this came about and how we got to where we were I didn't know.

I was scared, because I thought, if you're not enjoying this, what is it that you're going to enjoy? And it was scary.

Tell me a little bit more about some of the symptoms, and as they came up gradually, what were you noticing in Tom and how surprising it was.

All right. The most obvious was the depression, when he finally admitted it was depression. What I was seeing is, it was getting more and more difficult for him to get up in the morning. He was having difficulty sleeping.

Then he was having difficulty engaging. He wasn't keeping in touch with his childhood friends, his college friends, people that he had maintained very strong relationships with. He was pretty much cutting his sister out of his -- you know, Margy, his sister, is 15 months apart from him, and they were so, so close, and he was really kind of cutting her out.

He was no longer enjoying hobbies that he used to love, like skeet shooting and bike riding. And he wasn't cooking anymore. That was one of the biggest. Tom used to cook all the meals. He loved them. He would be eating breakfast and thinking about what he's going to have for lunch. And at lunch the conversation would be about what he's going to cook for dinner. And he cooked -- I mean, he was a really good cook, but he loved it. He stopped cooking.

And of course this is all in the end looking back. When this all began and when it became extreme, and when it became severe is really hard to go back and know for sure. Stopped listening to music that he loves. He just really stopped engaging in life.

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The pain and the need for medication, how did that come about? And where did that lead?

You know, a lot of it for me is speculation. I don't know how much of it is the pain was increasing and at one point it became unbearable, how much of it was the depression made it really difficult for him to deal with the pain or made the pain feel more extreme than it was. He always had pain, but he didn't used to complain about pain. I actually would forget that he dealt on a regular basis with aches and pains, until people would sometimes ask, and he'd say, "Yeah, I hurt all over."

But it never seemed to be a problem until later. When we had conversations about it, once he finally admitted that he was dependent on this prescription pain medication, which ultimately was OxyContin, I hadn't known that he was on -- he had been seeing a doctor who was prescribing it to him for chronic long-term pain, and I think by the time I was aware of it, he had been trying for some time -- he was aware that he was dependent, and he had been doing research on the Internet and everything and trying to figure out how he could wean himself off of it. So by the time I became aware of it, it was already a problem for him.

How big a problem does it become?

It became a very, very, very serious problem. And in fact, he was dealing with full-scale addiction issues, and ultimately he died of an accidental drug overdose.

Interestingly enough, when I first realized that it was pain medications, when he said, "Lisa, OK, this is what's going on," I was actually relieved. And it's not because I am in any way naive to the seriousness of addiction and what people go through with addiction and what it takes to live permanently in recovery, but simply because I was becoming more and more aware that this man I was living with was not Tom. It was feeling more and more like I was living with a stranger. And it didn't make sense, because here he is in late 30s, his early 40s, you know -- I couldn't make sense of it.

So when he presented that as an explanation, it was actually a huge relief to me to know, oh, my God, thank God there's an explanation for what happened to him, because that meant that I could one day have him back. We'll deal with the addiction, and then I'd have Tom back.

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But you find after a while that it really wasn't the drugs.

I really didn't find until after he'd passed away that it wasn't the drugs in finality. Certainly the drugs were a problem, and certainly they were exacerbating what was going on.

I will say that he was dealing appropriately with his dependency and with his addiction issues. He was getting very good treatment. He spent a lot of time in inpatient and outpatient care. And I will say that through that, I was becoming increasingly concerned that he wasn't getting better, and that he was in fact getting worse. ...

He embraced the whole 12 steps. He always felt that there was this higher power and whatnot, and was always seeking to do the will of this higher power. So he fully embraced it, was doing all they recommended, and yet I suspect what was happening is Tom was trying so hard to recoup just the satisfaction he used to feel in life and wasn't getting there, and I can't imagine that it wasn't just so incredibly discouraging for him.

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How unusual to you did it seem, a guy that you knew and that you explained was a very different kind of guy, could fall into this, a guy that you didn't even recognize anymore in a very few short years? How mind-boggling was that to you?

Completely and utterly. And I felt very much alone, because I was at a complete loss for what was going on. And again, because of the addiction thing, I was reading books on it and whatnot, and I was going to programs, and I was going to groups for family, and I was in Al-Anon. I was doing all the things I was supposed to be doing. But one of the things we learned through this is that the thing about addiction is, the drinking and the drugging are a symptom of this underlying disease that's associated with restlessness, irritability and discontent and that those are the hallmark of a personality. So you have to deal with those things. And I remember thinking to myself, restlessness, irritability and discontent describe Tom to a T today, but no way is it anywhere near the man I had known and the man I had been married to for years. And it was contrary to what I was reading in this.

So I thought maybe I'm just in denial, and maybe the amazing man I remembered from Cornell wasn't really ... as amazing as I remembered, that maybe I had -- because I was 19 when I met him, and you hear about puppy love, and you hear about how love is blind. And I thought, well, maybe a little bit of how remarkable I thought this person was was a little bit in my own mind. Maybe he's always been this, and I'm just beginning to see it a little.

I mean, I was really -- the bizarre things going through my mind to try to account for how somebody could change so drastically, I think I ultimately came to that point that well, maybe he always was not quite as great as I remember, and he's not as different as I recall, because it just felt like he's just not the man I remember. And I had no other explanation. I had no understanding of how it could be that he could be this different. ...

You have to understand, Tom and I were best friends, and we discussed everything. Even in these years that he was struggling so much to regain who he was, and to feel good and to be himself, we were having these conversations -- why, why, why? And never did it come up.

It never came up?

Never came up.

All the times he had been hit silly and knocked to the ground, none of this? And by this time it's late enough that there's some information out there. Were you hearing other information?

We had not heard it. This is May 2008 that he passed away. ...

But you have to remember I never knew Tom to have had concussions. And in fact when I got called and they said, "We'd like to examine his brain; we're looking at a connection between these cognitive difficulties and concussions," my response was: "You're not going to find what you're looking for, but I suppose the controls are as important as the case is. And if the intent is to make sports safer, I feel like Tom would want to be a part of that, so yes, you may examine his brain, but you're not going to find what you're looking for."

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And we'll get to that in a second in more detail. But in between, before that point -- I mean, you've got kids at home, young kids at this point, while you're going through this with Tom. How does this lead to -- you guys broke up. How does it lead to you breaking up?

We didn't break up actually.

What happened?

Tom was in residential treatment in Tampa prior to -- in and out really the last year and a half or so before he passed away. Once it became known that the drug problem was very severe, first he tried detoxing and doing outpatient. He seemed like he was improving for a while, and he relapsed. After that relapse he went into residential treatment, and once he came out of residential treatment, we thought again he did OK for a little while, and he ended up relapsing again. So it was a lot of in-and-out for a period of time. ...

When he ended up -- when he ultimately lost his battle, he was still in outpatient, I would say, treatment. He had moved back home, but he had another relapse. When he relapsed, he woke me up at 2:00 in the morning and he told me that he had. We went back to the doctor, and we told him what had happened. ... He said to Tom: "We can't help you. I think what you need is probably more long-term residential and more monitoring."

So we walked out of the meeting, and I knew that Tom had to come to this realization on his own... he went off, and he said, "I've got to do some thinking," and he went to some meetings with friends and did a lot of that.

Now, he had already relapsed, so he kind of -- he then went kind of off the deep end. But the night before he died, he was with a friend who had been in treatment with him. I think they were up all night, and the next morning they went for breakfast, and they're talking in this guy's apartment, and he says to him, "You know, I know that the doctor's right." He said, "I'm going to do what it takes, but I just, you know, had to get it out of my system one last time." And he said, "I'm tired." And he went in, and he lay down, and he never woke up. ...

Unbelievably young. So as hard as all that is, impossibly hard, you get a phone call from [former wrestler and co-founder of the Sports Legacy Institute] Chris Nowinski. What was that like?

I actually got an initial call from Bennet Omalu. [He] had left a message on my machine. I don't know where I had been. And I heard the message. By that time, both my father and my brother were in town, and both of them are doctors. And I let them know about -- I guess I probably let them hear the message, and I said, "What do you think?" I said, "Would you all both please look into this and let me know what your opinion is, whether this is legitimate science, something I should consider or not?"

And they both did, and they both came back and said, "I think it's something you should consider." So in responding to Dr. Omalu, we also then were contacted by Chris Nowinski, and Tom's tissue ended up going to both.

Why did you make that decision?

To donate, or to donate to both?

To donate, and to donate to both.

... Ultimately really it came down to this: I asked his family; I asked whatever family members were present, and I said: "These research groups are interested in investigating the long-term effects of concussion, whether it can affect long-term health of players. The goal is to protect athletes in the future. Do you think that we should do this?" And every single person said, "Yeah, I think Tom would want to be a part of it." And that's why we did it. ...

But I'm kind of surprised that I said yes. I'm so grateful I said yes, because even though I had never heard of any of this then, obviously I would have heard it at some point along the line, and there's no doubt that I would have absolutely agonized, just wondering, oh, I wish I had the confirmation of knowing. I know Tom had that disease. I know he did. Oh, how I wish I could know.

And I can't tell you how much it's meant to me to just have that confirmation that that's what happened.

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So tell me about -- Chris does eventually call you up?

Mm-hmm, I talked to Chris.

Tell me what he told you, what he said what they were doing, and then maybe follow up by telling me who Chris was. What did you find out about Chris eventually?

Well, obviously this person is a stranger to me. I could tell he was very young, and I could tell that he was very interested in this line of research that held very little interest to me because I didn't think it was relevant. ...

So this young person calls me, and I said: "Chris, listen, I've got to tell you, I am willing to do this because I think that both my father [and] Tom's father were doctors, and we believe in the importance of -- obviously if we didn't have subjects in research, we wouldn't be where we are. So yes, you can do it. But listen, I am -- Tom's name is being dragged through the mud because of the nature of his death, and I don't want to exacerbate that. I don't want this to contribute more to that." And he said: "I assure you, it will not. The results can be completely confidential; nobody has to know he's part of the research," and whatnot.

And I just -- I don't know why I believed him, but he seemed very genuine in his concern with the issue. And I did it.

It's been very interesting since then. Now, I ended up meeting Chris. That was May 2008 that he passed away. I heard from Chris a number of months later, maybe two months later, and he said, "We have the results." And he said, "What I'd like to do is set you up on a conference call with our team," which included Dr. [Ann] McKee obviously, [SLI co-founder] Dr. [Robert] Cantu, [then-co-director of the Center for the Study of Traumatic Encephalopathy at BU] Robert Stern and himself. We scheduled a conference call where they could explain to me what the findings were and what the implications of those findings were.

I got to know him a little bit through that, but it wasn't until a little later that fall he said: "Lisa, the Super Bowl is in Tampa in February. Because your husband played the bulk of his career for Tampa, that's where your home is. And because half of the world's media is going to be in Tampa for the event of the Super Bowl, or certainly all of the sporting media, would you consider participating in a press conference to take public Tom's findings?"

And I never hesitated to be public with Tom's findings because I was so fully blown away to know that Tom could have had the kind of injury he had to his brain and that it could have been caused by football. And I said: "My God, of course. This is information that I would have liked to have had, and I think everybody needs to have this information." ...

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So he sets this conference call up. You get the phone call. What took place?

First, Chris emailed me a couple of images of the slides, the ones that I think people are very familiar with seeing now in the media presentations of this, of the stained tau, the stain that picks up the tau protein. And of course it was all very much -- it was meaningless to me. At the time they said, "I suggest you might not want to open them until we're on the phone and we can explain what that is."

So I did, and I opened it, and they explained that he had this disease, and that what this disease is is that that staining that I'm looking at is a toxic protein that essentially kills your brain cells. They explained the areas of the brain that are affected, and obviously the ones that you know all -- that control impulses and decision making and emotional liability and all -- you know, executive functioning -- and all of the things that had affected Tom.

What was most compelling, of course, was the comparison between Tom's brain at 45 and the normal control who had died of cancer at 65. And you have to understand, [in] this 65-year-old control, the brain was pristine, this beautiful blue color with no brown. And Tom just had brown everywhere. And it was -- it was really -- it was devastating.

Devastating in one way, but also a relief?

I don't know if initially I felt that tremendous sense of relief, because I didn't know at that point -- now remember, we're back in the summer or the early fall of 2008 -- I didn't understand the significance just yet, because I didn't know that maybe CTE [chronic traumatic encephalopathy] can be caused by drug use, or that a lot of people have CTE and do OK, but Tom's was a little bit worse. I didn't fully understand like I do today.

But they had said to me, "If you have any further questions, feel free to call." And I did. And then I called again. First it was Dr. Stern, and he spent so much time explaining to me about dementia, about this, about that. And you know, Tom was the first case I had heard about really, so I'm just learning about all of this for the first time. And then I got on the phone with Dr. McKee, and once I fully understand [it] all, that's when I was just really blown away. It was really with time that I realized, oh, my God, this is so helpful to me to fully understand what happened to him.

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During that initial conversation, did they connect the dots to football?

Yes, they let me know that it was their opinion that it was caused by football, absolutely. But I think it just took me a while to really believe that. I guess I just really had a hard time believing that, partly because if football can cause that, how is it possible that millions of Americans are playing this game, and nobody's heard of this? And I've never heard of it, and I'm hearing it for the first time.

So as I came to understand it better and better, that's when I realized, oh, my God, this is going to be -- this is going to change sports forever. This has got to have a huge effect on the NFL, because this is concerning. I mean, they're going to want to know all about this. This is going to change everything.

So when we did go public with it, I think that was the most shocking thing for me is to learn, because they had made it very clear to me, this disease does not exist in the normal brain, absent -- we've never seen it in the brain of somebody who didn't sustain trauma, some kind of a repetitive trauma. It won't occur from one car accident or a single incident.

So if you're telling me that, and then you're telling me that of the six NFL brains that you've looked at, all six have it, how is it possible that the NFL's position on this is that there is no issue?

That was 2008; it's 2013 now.

That was January 2009 when we went public with the findings, and Tom was the sixth one. ...

Take us then to the press conference in Tampa. ... How does Chris describe it, what they want to do, why they want to do it at the Super Bowl, what the goals are, and how you come to the conclusion that you know what, this is the right thing to do?

Yes. Well, again, going back, there had been four cases identified. And when Dr. Omalu identified the first couple of cases, of course he published in journals and felt that this was something that the NFL needed to be aware of and concerned about. ...

When Chris came on the scene, he was there for Andre Waters and the Justin Strzelczyk and the [wrestler] Chris Benoit cases, and was part of working with Dr. Omalu in order to get the families to agree to the thing, so he was acutely aware of how important it was that there were so many cases among the NFL players. ...

He recognized, I think, the need to not use the media, but to utilize the resources of the media to get this out there to the public, so that he could almost bypass the NFL and say: "OK, well, we'll generate the concern. We'll generate the concern so that the pressure is put on the powers that be to enact change and pay attention to this important issue."

Tom was one of those. I think the thinking was, well, obviously the media that's going to be most concerned about this issue is all gathered in one place in Tampa, so it makes sense to release the findings there to get the biggest attention brought to the issue that there could be, because it's an important issue.

So were you there that day?

I was there.

What was the room like?

I was beside myself. You have to understand I don't allow home videos of me. I don't like being on camera. I don't like being interviewed. I don't like public speaking. But I put all that aside because I thought, you know what? Again, I would have wanted to know this. So absolutely I put it out there. ...

And what did you say?

I wish I could remember. I'm sure that I probably shared what had happened to Tom very briefly, how shocking it was, what it meant to know that, and that I believe that this research is critical, that the NFL needs to respond to it, and what it means, most importantly I think, is that the issue probably impacts millions of American kids playing the sport, and we need to know what risk there is to them, and right now we have no idea. ...

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And the reaction of the NFL to this? I mean, it came up briefly in the commissioner's press conference days after that. What was the reaction? Were you guys surprised? Was there any conversation amongst you about how they reacted?

Well, I would imagine so. As I recall, both the league and the Players Association, the reaction was pretty much a nonreaction, I would have to say, continuing to deny that there was an issue here, that there was significance I think in the fact that a sixth player has been identified, because if I remember correctly, what they said is there's a whole lot of players out there that don't have it.

Even you had said at one point that you guys knew a lot of retirees, and you didn't see the problem. Do you understand that reaction?

No. I'll tell you why. Because I can't imagine that they weren't inundated with claims, inundated with claims from retired athletes asking for help. And I just wasn't privy to that information.

I'll also say that living with him -- I can't tell you how many people said to me, "I had lunch with Tom the week before; I saw Tom the week before; I had no idea." And I've heard the same thing of Andre Waters. I've heard the same thing of several of them. And I've now, in my capacity as director of family relations, I've worked with 130 families now, and those where CTE was present will say the same thing.

If you're ever been with somebody who has Alzheimer's in their early stages, they do a lot of compensating; they do a lot of things to try to compensate for the beginning deficits until the disease progresses to such an extent that they can't hide it anymore. Tom was only 45 years of age. Even so, he had a Stage 3 disease; Stage 4 is full-blown dementia. He was really advanced. So he was compensating probably pretty well for his level of disease. ...

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How do you end up joining up with them? What is your role?

... I couldn't drop the issue, because one of the things is, right after meeting them and attending this press conference, the thought to me in all of this was absolutely I'm exceedingly concerned about all Tom's former teammates and all the other guys in the NFL and what this means for them. But I'm also curious about my boys who are now 8 and 10 and playing Pop Warner football. What is the risk to that?

And essentially the doctors are saying to me: We just don't know yet. That's why this research is so important; we need to find out.

So I went home and I read Chris' book, Head Games. That's really when this became very, very real to me, when I realized, oh, my God, what I was reading in the pages of that book and what I had up to then understood a concussion to be could not be further apart.

What was concerning to me is this isn't because I'm ignorant; this is because 99 percent of the world is ignorant. Nobody knows this stuff. And the opening pages of that, in the opening paragraphs I believe he described four cases of high school football players dying of second-impact syndrome within I believe a two-month period in a single season. And I'm thinking to myself, I would bet any amount of money that not one of those moms who lost her babies had ever heard of second-impact syndrome and had no idea, no idea their kids were at any risk.

And that's when I could not let the issue die. That's why I just was staying in constant contact with Chris and all this, because I felt there's nobody out there talking about this. There's nobody making a bigger impact about this issue than Chris Nowinski, and he'll answer my emails. (Laughs.) So a part of it was really that.

At one point during one of our emails I said to him, "Chris, you're essentially doing this all on your own, aren't you?" And he said, "Well, yeah." And I said, "You need help; you need help." And he said, "Yeah, as soon as we get some funding I'm going to hire somebody." And I very jokingly wrote back, "Well, if you're looking for somebody with zero experience and virtually no skills," because I had been a stay-at-home mom now for at this point 13 years since my oldest was born with special needs, I said, "If you're looking for that, then let me know, because I think I'd be perfect."

He wrote back, "Are you serious, because I think you'd be great." And that's where it began. I started on working -- "Hey, I can give you like 10 hours a week," and it's part-time from home, and he said, "Yeah, I need you to coordinate volunteers and be the liaison between the family members and the researchers."

They are not. They are not. They actually played the year after Tom passed away. Tom passed away in May, and they were all fired up to begin the season. And Tom had been a coach with them during flag and whatnot. And the younger one, who was now just 8, it was going to be his first year playing tackle, and he was so excited about it. ...

I actually remember sitting at a practice and hearing the young one, the 8-year-old, they were doing that drill where you line up and run at each other as fast as you can. And I remember him getting all excited to the coach: "Yes, that's what I want to hear, the crack of the helmets against each other." And I remember sitting there thinking, oh, no, this can't be right.

So after that season -- it was in that off-season that I read the book and whatnot. And that's when, when the following season was approaching, they were all fired up to play again. I said: "Hey, guys, you know what? What do you think about taking a year off, because if you do that, we can spend a little more time with Grandpa in the Bahamas, and you don't have to be back in July. And there's all these benefits to taking a year off of football." And they both said, "Yeah, OK, Mom."

It wasn't a problem talking them out of it. It was all actually very easy for me. ... It really was later that particularly the younger one -- and the high schooler now -- says, "Mom, can I play football if I only play this position?" And they ask. And I say, "You know what, guys, I'm just not comfortable with it." But I think they give me more flap just to give me flap than they really care. ...

The legal cases that are going on right now, are you a member? Why did your family become plaintiffs in this case? ...

I think the NFL does have to be held accountable for their role in this, for their initial reaction for all of this, for their failure to act responsibly when the science was indicating a problem.

I think they exacerbated the problem terribly by, while they were being warned of certain things, glorifying the big hits. ...

I think it's irresponsible, I think it's wrong, and I think there's so much more that they need to be dong in terms of protecting younger kids. And then they need to be taking care of the athletes who will have been affected, because of the athletes' ignorance to the risks they were taking in playing. ...

The NFL still says in 2009 they did come out and sort of say there does seem to be long-term consequences to concussions. But they still maintain that there is not enough evidence to prove that CTE has any connection to football. When you hear that, does it drive you nuts?

Well, you know, I'd be interested in knowing what they think causes -- you know, getting these guys together and finding another correlation that correlates highly with these guys and not with everybody else than football.

Yeah, the fact that they can continue to say that to me seems asinine. I think even most reasonable individuals will say, "OK, apparently, it caused it in these individuals, but they might want to make the case, well, for whatever reason, these guys were much more susceptible and that maybe all the other players don't have the same level of risk."

Honestly, I hope to God they're right. But I think we are just beginning to see the tip of the iceberg in this. I don't think people have any concept how many people are out there struggling. ...

Ψ Share

You said at one point that Tom would write in his diary about constantly feeling -- what was he writing in his diary? What was he understanding about what he was going through?

That writing was something that I had come across in the materials and stuff that he had brought home from when he was in treatment. It had been an assignment. And in that is where I had read that, where he said, "I feel like I'm losing my mind." Those writings were really hard to read, quite frankly, I mean, because he didn't have the kind of insight that we have now, and he just --

Nothing causes me more pain than to look back on those days and relive the frustration in his mind. You know, Tom used to -- I remember so clearly him looking at me, and this is going back, you know, in the final months of his life, and saying, "Lisa, when I look in your eyes, all I see is disappointment." And I honestly don't know whether he was seeing my disappointment or whether it was his own disappointment that he was seeing reflected back.

And I don't know that it really matters. Maybe it was a combination of both. But it pains me to think of how much that hurt him. And I wish he had known about chronic traumatic encephalopathy. And I wish I had known -- he had known -- that he's not alone. And I wish he had known that there was a neurological cause for what he was experiencing, and it wasn't simply because he was just a failure.

You know, the people around him in recovery were getting better, and he wasn't. And I know how disappointed he was in himself. ...

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